Up to 80 per cent of community care for older adults is provided by unpaid informal caregivers. In the absence of government supports, many of them struggle with exhaustion, stress and depression.(Shutterstock)

Her stress increased as her parents started to deteriorate physically and mentally. She tried to stay ahead of the ever-changing situation, but became exhausted after her dad started waking in the middle of the night and getting dressed to go out.

Increasingly, these older adults have multiple chronic conditions (MCC), such as dementia and stroke, not just one. And as this prevalence of multiple conditions increases worldwide, it’s associated with poor health and higher health-care use and costs.

Caregivers report that they do not receive adequate home care or respite services to support them in their roles. There are, for instance, long wait lists for long-term care beds.

Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.(Shutterstock)

While caregiving is rewarding, many informal caregivers experience stress and anxiety leading to their own poor mental and physical health.

Informal caregivers feel overwhelmed with multiple requests for their time and frustrated when they can’t plan too far in advance.

“I felt like I was spending a lot of time waiting. Waiting for people to get ready. Waiting for people to get back to me. Waiting at appointments,” said Brenda.

Some reach a crisis point and leave their loved ones in the hospital emergency room because they are unable to continue in their caregiving role. This contributes to an already overburdened acute-care system.

Web-based supports can help

We conducted a systematic review and meta-analysis that examined the impact of different types of internet-based interventions on caregiver mental health outcomes.

One example of such a web-based support is My Tools 4 Care, developed by our colleague Dr. Wendy Duggleby at the University of Alberta and her team.

We found evidence that internet-based interventions had a positive effect on reducing depressive symptoms, stress, distress and anxiety in caregivers of adults with a chronic condition.

The most effective category of online support was information and/or education with or without professional psychological support. Information provided together with combined peer and professional psychological support was also effective, to a lesser extent.

Caregivers in our study made recommendations to improve the content and format of online resources. Suggestions included: Providing personalized information about local resources; sharing practical caregiving tips and strategies; creating opportunities to connect online with other caregivers; and having user-friendly features that are easy to navigate.

Nova Scotia leads the way

Caregiving comes with costs to the caregivers — to their health and to their finances.

Half of caregivers are between 45-65 years of age, in the peak of their earning years. They often take time off work to take their loved ones to appointments, and some must leave work early when the health of their loved one worsens. Out-of-pocket expenses for equipment, medications and parking can also be expensive.

Nova Scotia is the only province in Canada that has a monthly income or allowance for caregivers, known as the Caregiver Benefit Program. Financial assistance from the government for caregivers in other parts of Canada mainly take the form of federal tax credits and insurance benefits.

8 Residents in a care home and it costs no more than a regular care home in Switzerland. Watch the videos to find out more. Please note that in the first video the language does not adhere to dementia language guidelines.

Medications which are commonly prescribed to people with dementia have been linked to an increase in harmful side-effects, research involving the University of Exeter has concluded.

The research, presented at the Alzheimer’s Association International Conference (AAIC) examined the impact of opioid-based painkillers or a class of sleep medication known as Z drugs (zolpidem, zopiclone and zaleplon). They are prescribed to an estimated 200,000 with dementia living in care homes across the UK in total.

In the opioid painkiller research, a team from the University of Exeter, King’s College London and the University of Bergen highlight a tripling in harmful side effects related to the use buprenorphine in people with dementia, compared to those on a placebo. Researchers also identified a mechanism that may be causing the problem.

In a randomized controlled trial of 162 Norwegian care home residents, the team found a significant rise in side effect such as personality changes, confusion and sedation, which can seriously impact people’s lives in dementia. The trial team, led by the University of Bergen, studied 162 people from 47 Norwegian care homes who had advanced dementia and significant depression. In those who were assigned buprenorphine as part of their treatment pathway, harmful side-effects more than tripled. The researchers also found that those taking buprenorphine were significantly less active during the day.

In the Z-drugs research, the team compared data for 2,952 people with dementia who were newly prescribed the medication with data for 1,651 who were not – in order to evaluate the benefits and harms of the medicines. They found that people who take Z-drugs are more likely to fracture a bone than those who do not. Bone fractures are related in turn to an increased risk of death in people with dementia.

Researchers are now calling for studies to examine alternative non-drug approaches to treating pain and insomnia, and appropriate dosing of painkillers such as buprenorphine for people with dementia. Clive Ballard, Professor of Age-Related Diseases at the University of Exeter Medical School, said: “Research into antipsychotics highlighted that they increased harmful side effects and death rates in people with dementia. This compelling evidence base helped persuade everyone involved in the field to take action, from policy makers to clinicians, reducing prescribing by 50 per cent. We now urgently need a similar concerted approach to opioid-based painkillers and Z-drugs, to protect frail elderly people with dementia from fractures and increased risk of death.”

Importantly, research led by Professor Ballard’s team and also presented at the conference also gives insight into the mechanism of why people with dementia are more susceptible to opioid-based painkillers, suggesting they over-produce the body’s natural opioids.

The study treating arthritis in Alzheimer’s mice found increased sensitivity to the opioid-based painkiller morphine in mice with Alzheimer’s disease compared to those without. Those with Alzheimer’s disease responded to a much lower dose to ease pain, and experienced more adverse effects when the dose was increased to a normal level. Looking into this further the study found that the Alzheimer’s mice produced more of the body’s natural endogenous opioids such as endorphins. The study, presented as a poster at AAIC, also concludes that dosing of opioid-based painkillers urgently needs to be reviewed in people with dementia to enable safe and effective treatment of pain, and prevent unnecessary harm and deaths.

Posters presented at conference have not yet been through the journal peer review process.

An e-learning programme that trains care home staff to engage in meaningful social interaction with people who have dementia improves wellbeing and has sustained benefits.

The average person with dementia in a care home experiences just two minutes of social interaction each day, researchers found. They also showed that out of 170 available training programmes for nursing home staff, only three are evidence-based – none of which improve quality of life.

The Wellbeing and Health for people with Dementia (WHELD) programme trained care home staff to increase social interaction from two minutes a day to ten, combined with a programme of personalised care. It involves simple measures such as talking to residents about their interests and involving them in decisions around their care.

Carers took part in an e-learning programme based on the WHELD training, with or without Skype supervision. They compared outcomes to usual care. Both treatment arms improved resident wellbeing and staff attitudes to person-centred care. The Skype supported arm continued to deliver improved resident wellbeing four months after the trial was completed.

Joanne McDermid, of King’s College London, who presented the research, said: “Care home staff are under a lot of pressure – it’s a really tough job. It’s a challenging environment for both residents living with dementia and staff. Our programme moved care staff to see dementia through the eyes of those who are living it. We found a simple approach, delivered as e-learning, improves staff attitudes to care and residents’ wellbeing, ultimately improving lives for people with dementia.

“In a traditionally task -focussed work environment, our programme reminds us of the human side; of the full life experience of those living with dementia in care.”

Professor Clive Ballard, of the University of Exeter Medical School, who led the research, said: “Just take a moment to imagine life with just two minutes of social interaction each day. To accept this is discrimination against people with dementia. We urgently need to do better. Most care home training programmes are not evidence-based. We know our programme works over the long term, and we now know it can be delivered remotely. We now need to roll this out to care homes.”

16 January 2018 | New York – Study Finds Racial Differences in Reporting and Overall Trend of Underreporting Cognitive Impairment

An increasing number of older adults are reporting cognitive impairment in their families over the past two decades, according to a new study led by researchers at NYU Rory Meyers College of Nursing and East Carolina University’s Brody School of Medicine.

The study, which also finds ethnic and racial differences in reporting cognitive impairment, is published in Preventing Chronic Disease, a journal of the Centers for Disease Control and Prevention.

The aging population in the U.S. is growing rapidly, with the number of people age 65 and over in 2010 (40.2 million) projected to more than double by 2050. With the rapid increase in the aging population, the size of the population with cognitive impairment and dementia will continue to accelerate, highlighting the importance of identifying cognitive changes.

“Cognitive impairment may serve as a precursor to future dementia. Early detection of cognitive impairment can facilitate timely medical treatments, appropriate care planning, and prevention efforts,” said Bei Wu, PhD, Dean’s Professor in Global Health and director of Global Health & Aging Research at NYU Meyers, co-director of NYU Aging Incubator, and the study’s senior author.

The study sought to examine the trends of self-reported cognitive impairment among five major racial/ethnic groups from 1997 to 2015 in the United States. The researchers used data from the National Health Interview Survey, including 155,682 individuals age 60 and above in their sample. The large sample included people of a variety of races and ethnicities, including Asian Americans, Blacks, Hispanics, Native Americans, non-Hispanic Blacks, and non-Hispanic Whites.

Rather than using a screening test or clinical examination to evaluate cognitive impairment, respondents were asked to report if any family member was “limited in anyway because of difficulty remembering or because of experiencing periods of confusion.”

The researchers found an increasing trend in self-reported cognitive impairment: the overall rate increased from 5.7 percent in 1997 to 6.7 percent in 2015 among older adults in the U.S. This finding may suggest that awareness of cognitive impairment, perhaps from heightened public attention to and interest in Alzheimer’s disease, has improved to some extent.

When looking at each racial/ethnic group, however, the increasing trend was significant only among White respondents. In Whites, the rate of self-reported cognitive impairment increased from 5.2 percent in 1997 to 6.1 percent in 2015. Asian American, Black, Hispanic, and Native American respondents had higher rates of self-reported cognitive impairment than Whites, but these rates did not significantly increase from 1997 to 2015.

Regardless of the overall increasing trend, the rates of self-reported cognitive impairment were still low, which may suggest underreporting. The researchers note that the rates of self-reported cognitive impairment are much lower than the estimated prevalence of cognitive impairment. For adults 65 years and older, the rate of self-reported cognitive impairment was 6.3 percent in 2000 and 7.5 percent in 2012, while the estimated prevalence of cognitive impairment in the same age group was 21.2 percent in 2000 and 18.8 percent in 2012.

These findings underscore the need to further promote awareness of cognitive impairment, especially in minority populations. Different cultures hold different beliefs and perceptions of disease and aging. For instance, research has found that compared to Whites, minorities are less likely to seek treatment for psychiatric symptoms because of lack of access to care or due to stigma.

“Culturally specific health education is needed in individuals, family members, and healthcare providers to improve awareness and knowledge of signs and early symptoms of Alzheimer’s and other dementia,” said Huabin Luo, PhD, of East Carolina University.

In addition to Wu and Luo, Gary Yu of NYU Meyers coauthored the study.

A recent article by BBC Scotland health correspondent touches on the plights of younger adults placed in care homes for the elderly due to the lack of services in the community.

Romana (seen below) is one of the many in Scotland who was placed in a care home for the elderly when she suffered a brain haemorrhage at the age of 23, whilst pregnant.

Given the non-purpose built environment, the community in the care home and the level of services of care, it was no appropriate for a person such a Romana. She felt she had lost her family. It took 2 years before she was offered a place in a neurological centre in Aberdeen according to the article.

Pamela Mackenzie (Sue Ryder’s assistant director Scotland) was quoted as saying that “Romana was quite a different lady when she first came. She was withdrawn and depressed and she really had been written off.”

This is certainly an important issue to address the inequalities in care and ensure that younger adults attain the right services that need for rehabilitation to enable them to return to their families.